Anonymous
Hello all – this is my very first post. Male, age 59, diagnosed last week and very worried about what is to come. I have an amazingly supportive and caring wife, thank God.
I would value views on the RADAR trial.
My consultant has said that, if eligible, then I can choose between the ‘standard’ treatment and participation on the RADAR XV trial, which will mean travelling to Addenbrooke’s. I am trying to weigh up:
STANDARD TREATMENT
– Much more convenient (20 mins to Peterborough rather than an hour or more to Cambridge)
– Treatment would start very soon.
RADAR
– Need to travel to Addenbrooke’s
– Long delay before treatment starts
– What appears to be a degree of ‘personalisation’ would seem to be attractive.
I am retired so the time/travel involved with RADAR is not really a major worry.
Any thoughts? I won’t know until after a Multi-Disciplinary Meeting on Monday whether or not I am eligible for RADAR but largely due to the ‘personalisation’ I think it sounds like it may be the better way to go.
gcParticipant
Thanks for your replies. Its always good to know you are not alone.
As far as post SCT goes then life is different. I havent gone back to “normal” and accepted that isnt going to happen. I am in the high risk group and didnt get a complete response so still some myeloma present. I am in the Radar trial so on a maintenance programme which (touch wood) is keeping things at bay. I have fractures in my back so back pain is a pest and my mobility is not as I would like. The fatigue drives me mad.
Having said that I lead a pretty full life, and enjoy the things I do. I am still not good at pacing myself so frequently ” overdo” things. I’ve taken up new hobbies and now appreciate the area I live in so happy taking short day trips. Thoroughly enjoy a coffee and cake with friends! I enjoy the little things.
Anne- I’m in Scotland too. I do hope the peak has passed as I said earlier Covid seems rife- and that’s from people who test!
I didn’t respond to initial treatment on radar trial, I then had 2 rounds of dtpace with a partial response. 1st attempt at stem cell harvestzafter this failed. I then had 4 rounds of krd (carfilzomide, len and dex). I struggled with the dex dose but persevered to get to a successful stem cell harvest attempt and sct as this was the most successful treatment in lowering paraprotein
I’ll be honest I struggled with extreme fatigue throughout, fairly certain the dex causing crashes each week when I came off it as I had this in the 4th week of yhe cycle as well. Hopefully you’ll tolerate the dex better!
Hi
Thanks you for your lovely response and sorry I didn’t spot it sooner!
I was originally diagnosed in December 2013.
I have Sjorgren’s Syndrome. (I don’t expect you’ll have heard of it, but it’s one of those autoimmune conditions!) and inflammatory arthropy. I was having 6 monthly Rituximab infusions to help my joints. These started in 2018 and basically gave me back my life. No more joint pain although the fatigue and brain fog were still evident. The regular blood tests showed up a problem with my IgA level so I was referred to haematology. Ct scans showed nothing and I had no symptoms that I was aware of. As my levels were still rising I had another Ct scan which again was clear so they requested a bone marrow biopsy. This showed the Myeloma.
I had understood that the Myeloma was smouldering although it was still something of a shock and a lovely Christmas present!!!!
In February my husband, Martin and I went to meet my new consultant and were rather shocked to hear that they wanted to start treatment immediately!! I opted for the RADAR XV because, well why wouldn’t you. The bone marrow biopsy was uncomfortable rather than painful so the fact that I would have to have more didn’t worry me.
Unfortunately the dental check up before treatment could start showed that I needed a wisdom tooth removed. I have to admit at that point I did have a bit of a sense of humour failure, but it was all arranged through the hospital, done very quickly and I had no problems.
The 12 week induction chemo was fine.
I had my stem cell harvest on Monday and reached the sum of 5.2. Applause all round. I had a bit of a calcium crash part way through. I started feeling hot and faint. Obs were fine. So you lie there thinking I really don’t feel well, but am I making a fuss? The nurse gave me 2 calcium tablets and as if by magic I immediately felt better!
So now I’m waiting for the SCT. I have a date for reinfusion on 2nd August. It’s a bit complicated here as I live in Torquay and the harvest and reinfusion are done at Derriford Hospital in Plymouth. So I will be admitted to Torbay and ambulanced to Derriford!
Really reassured by your comments re your SCT but would like to know the really bad bits.
I haven’t been to church since starting the induction chemo. But my vicar came and gave me home communion last week, which was lovely. I’m in 2 minds as to whether to go between now and admission to hospital and would welcome your advice on that, although I appreciate that we are all different.
I have a BIG birthday coming up at the end of July and my 20 year old daughter, Sophie has arranged a coffee and cake sale at my church to raise funds for Myeloma UK. She wanted something positive to come out of my diagnosis.
I too have a rock for a husband. Where would we be without them?
My faith too means that I have felt at peace throughout. Although I am rather apprehensive about the next bit!
Thanks again for replying.
Sara
My mum is currently on the RADAR trial and has finished her induction treatment (4 cycles of lenalidomide, dexamethosone, cyclophosphamide and bortezomib) – she has responded to well to the treatment and we were all geared up for her have the SCT at the end of July, she had her Hickman line put in and was due to start her GCSF injections tomorrow but we got a phone call this afternoon to say after an MDT meeting they have decided she is not eligible for an SCT and they are removing her from the trial with no explanation – they have made an appointment for Monday with the consultant but we are both just lost and confused about what happens next as we only know about treatment options with the trial – I assume they will explain on Monday but that feels like a long time away when she has been in tears all afternoon as she feels she has done something wrong which is not the case but don’t really understand what’s happened. Has anyone else experienced this? Part of me is glad she’s not having the SCT as know how difficult it can be but the other part of me worries about the future as SCT was always sold to us as a bit of a golden ticket to a long remission – she’s only 62 and I’m so worried about what this means now.
Hi
Is there anyone else on here taking part in this trial?
Currently on week 11 of the 12 week induction chemo so interested to hear of other people’s journeys.
Please could someone tell me about their experience of this. How was the drug administered? How often and by whom?
I’m on week 11 of my induction chemo and am part of the RADAR XV trial.
gcParticipant
Hi.
I’m 69 with high risk MM. I was diagnosed January 2023. SCT in June but no complete remission. I’m on a Radar drug trial and now on a maintenance programme.
This involves Lenolidomode for 21 days- seven days off. Isatixamab by drip every 14 days and Zometa every month plus pain relief and other oral meds.
I’ve found it hard going. Zometa seems to be the culprit as to the side effects. I also started my revaccinations and have had a few adverse reactions….not sure if it’s worth getting revaccinated!
I’ve found the maintenance programme a bit of a slog……mind you the sun is out, that should help
Just wondering if anyone else is or has been in a similar situation.
gcParticipant
Hi
I’m high risk MM. I was diagnosed Jan 2023. I’m on a radar trial and was about to start the maintenance programme. I was doing well all things considered.
Earlier this week I slipped coming out of the shower and I’ve fractured my hip. However I could walk without agonising pain. I got xrays and CT scan and there was talk of a hip replacement. I was admitted to orthopedics. Eventually they decided not to operate and “manage the break conservatively.”
The physios on the ward gave me 2 sets of crutches and a zimmer. In hospital initially they had me walking with my bad leg still in use- lightly weight bearing. Then it was decided no weight bearing at all. In effect I have to hop. I was discharged very quickly with little guidance.
Now home, I’m finding this exceedingly difficult because of the strain on my shoulders and I’m terrified I fracture a bone there. I’ve an appointment with a
Community Physio on Monday so am hoping for help there. I have a phone apptmt with my myeloma consultant..
I’m thoroughly fed up and disappointed. I get very frustrated at constantly finding I cant do things. I’m usually a can do type of person.I’ve had a couple of very necessary meltdowns.
Just wondering if this has happened to anyone else and how you coped.
Hi all,
This is the first time I’ve posted but keen to reach out to see if there’s someone who’s been in a similar situation to me. I’ve just been diagnosed with lambda light chain MM following an incidental finding on a blood test – the most recent result was Kappa 11.8mg/l, Lambda 1600.4mg/l – ratio 136. The bone marrow plasma cell level was 15%. Other results are normal at this point. I have no symptoms atm. Officially my FLC ratio in addition to the plasma cell level mean that I have MM and therefore can begin treatment or be closely monitored. If I decide to go ahead with treatment now I could join a trial (RADAR) or have the standard NHS treatment (chemo plus stem cell transplant). Has anyone else found themselves with this decision? I’m 51 and working.
Many thanks in advance!
gcParticipant
Hi.
I am on the Radar trial. I had my SCT in July and my 100 days post it went ok. I am high risk so automatically go on the consolidation pathway. It is 12 weeks in cycles the same as induction. I am struggling through this mainly I think because unlike induction I know what to expect!! However I am really fortunate as the side effects are mild and easy to cope with.
I am on week 5 of treatment but…I have caught this cold which seems to be everywhere. I thought it had gone. My consultant stopped treatment for a week to let me recover and I felt better. Yesterday it started again runny nose, cough, tired and so on. I’ve phoned the hospital and they will check with me tomorrow to see about my treatment on Wednesday.
I’m really fed up…..before myeloma I would take a cold in my stride but now it floors me. Im careful about where I go and who I see and really dont want to be a hermit. That would be worse!
I think this has been a wake up call as up until now I’ve felt relatively well or at least I’ve convinced myself of that.
Now a cold makes me feel like an invalid!
I’m sorry I just needed to rant! I know it will improve.
Sorry I’m more than a year out of date on this thread but have just joined the forum and finding it helpful to share experiences. I shied away earlier on in my diagnosis and treatment for fear of information overload and tbh, not wanting to feel part of a ‘club’ (of myeloma sufferers). I hope this makes sense. I joined lately as I’m having a bit of a tough time physically and mentally, and feeling very isolated.
I joined the RADAR trial in January and as a high risk patient am now half way through the consolidation treatment which is part of a high risk pathway. My response after induction cycle 1 was remarkable and after the 100 post-SCT recovery period, I was MRD negative.
I am wondering how others are getting on with treatment under the RADAR trial
Best wishes to all.
S
Hi everyone. Here is a message from Emma, the Head of Digital at Myeloma UK, who wanted to give some context to the app; This is a pro bono project we started with DS Partnership a couple of years ago. We ran into difficulties with the project and getting the app to work as it should (this may be why some of you are having issues) and so we stopped working on it as we didn’t think it was the right tool. We were not aware it was publicly available as it was never meant to launch so I will reach out to DS Partnership about this.
From a data security POV, assuming they haven’t changed the code base then all personal details entered into the app should only stored on the user’s phone so DS Partnership should not have access to this.
If an app like this is something you’d find useful then please let me know as it is still on our radar as something we’d like to develop in the future if there’s a need for it. Thank you.
gcParticipant
Hi everyone
I am due to go in tomorrow (Monday) for my SCT. I’ve read much on the subject here on the forum and found it incredibly helpful.
I was diagnosed with myeloma and I’m in the high risk group. I’m also on a radar trial so I feel as if I’m giving myself the best chance I can.
My team at the hospital are great….I soent 18 days there in January this year when I was diagnosed and have been attending the daycare unit ever since. As a result I am not going into the unknown.The bag is down from the loft ready to pack and I think I’m organised.
However I feel very apprehensive and jittery. What I’ve learned (if anything) about myeloma is you cant prepare, there always seems to be a ‘curve ball” at some point.
My biggest concern is my mobility. I’ve lesions and fractures in my back. Ive worked hard to keep and improve my mobility. It’s not great but I can get about and can walk short distances. I’m anxious that 3-4 weeks in hospital plus the recovery time after is not going to help
I would welcome any advice or shared experiences about mobility after SCT.Thanks.
When I started this trail I only completed 1st week as I caught flu which put me in hospital for 8 days and them home rest for another week. Restarted the trail from week 2 and I needed to have some units of blood during week 2-3 of trial I am currently on cycle 2 week 2 of the Radar trial and when you hear the words chemo you think of the bad side effects that chemo can entail but I am very surprised that I have had no side effects from the treatment (so far). I do not know what my current levels are but I do feel a lot less tired and have a bit more energy compared to pre trial. Hopefully my myeloma can be pegged back to low levels and stay there for a long while.
Best wishes to all
